Letting Her Go: How direct care work prepared me to care for my wife

John Booker

We direct care workers are a very important and powerful group of individuals. At times, we actually hold the very power of life and death in our hands. Especially if we are CPR-certified or have some advanced training, we can perform interventions that make a profound, life-sustaining difference in a matter of moments.

And those skills, I’ve learned, apply to our own lives as well as our work.

When I was challenged, many years ago, with assisting my mother in her last days, I had no CNA training or experience. I had no idea how to help my mother or make her comfortable and myself safe, so we both suffered.

As a result of that experience, I became a professional direct care worker. I soon acquired a new set of skills, like how to take someone’s blood pressure and recognize its danger signs, how to measure a pulse or respiration rate and know what to make of the results, and how to position a bed-bound person. I also learned about things like the need for special diets and the importance of proper hydration – all important skills and knowledge for helping to maintain a person’s life.

A few years ago, I was called on that training for a purpose I had never anticipated: Caring for my wife during what became a long battle with cancer. In caring for her, I found that my direct care worker training and experience made me a much better caregiver, but it also brought me face to face with a terrible choice.

At least twice, my knowledge of body systems and vital signs, especially as they related to my wife’s condition, helped save her life, as I found that her blood pressure was dangerously low and rushed her to the hospital for emergency care. That was a very encouraging and empowering feeling.

As her conditioned worsened, I was able to use my skills to assist her in many ways. That gave me a sense of power. I even began to hope that I could help turn the tide and she could beat this unyielding disease.

However, there was one thing that I was forgetting … my wife’s own views. She had struggled so long and so very hard during this multi-year battle that she had become very tired and disillusioned. After a while, she just wanted to rest.

As her condition began to deteriorate and my desire to intervene became more and more consuming, she let me know that I was to back off when we got to the final stage of the fight, restrain myself from using my skills, and let nature take its normal course.

It took every strength in my body, every fiber of my nerves not to revive her after she took her last breath earlier this month. I felt sure I could use CPR to bring her back, if only for a little while. I wanted nothing more, but the smile on her face proved to me that the decision we had come to was the right one for her.

As I thought about her final moments in the days that followed, I realized that honoring my wife’s wishes was also something I learned from my direct care work. I was taught to honor the rights of the people I cared for, including the fact that they are entitled to the final say in how they are cared for.

Following that simple-sounding mandate may be the hardest thing we caregivers ever do. Caring for my wife as her disease sapped her strength, sometimes making her violently ill, was often difficult. But none of that was anything compared to how hard it was to do nothing but hold her tight as she slipped away from me.

You have identified the core reason that keeps all caregivers going — especially spousal caregivers, who have a much more intense and different relationship with their ill partner, than other family caregivers have with a parent, child, sibling or friend.

Here’s the reason — Because we can! — that’s what keeps us going.

You said: “As her conditioned worsened, I was able to use my skills to assist her in many ways. That gave me a sense of power. I even began to hope that I could help turn the tide and she could beat this unyielding disease.”

You even had more special skills than most, that gave you a better handle on how to help your wife in her many hours of need…

The insight in your conclusion is so true — in the end, it’s the patient’s decision to make, about how much or how little heroic (or even ordinary) medical efforts he/she wants done.

I would add my own conclusion, which I’ll write about in my blog… The overwhelming tendency for spousal caregivers is to throw themselves into the battle to save or improve their partner’s latest health crisis. The danger is, that in the process we could lose ourselves, and this will turn into burnout. For us to be at our best as caregivers, we need to have a balance in our lives, by having some parts of our lives that involve time for oneself, and have nothing to do with caregiving.

I know that you found this struggle to be both bitter and sweet. Cherish the memories that you have and know that you did a wonderful work by being there for her. Forgive yourself if you think you made mistakes. She knows you are not perfect and every moment you spent caring will last on in eternity. May you have the opportunity to practice what this experience has taught you in your professional life.

Your story was so beautifully written. I’m so sorry for the loss of your beloved wife.
She was so blessed to have you there, while respecting her wishes. You will never regret that.
It’s people like you that make direct care workers stand out!
God bless you.

John I am so sorry for your loss. I will keep you in my thoughts and prayers. May you find the peace in knowing that she is no longer suffering and she is know keeping watch over as you did for her during her fight with cancer. God bless, Shannon.

John, condolensces on the loss of your wife. Although the circumstances are difficult, I wish everyone could read your piece and come away with the same positive impression I got…you are a quality individual and a quality representative for direct care workers. Thank you.

Dear John, I am so sorry for your loss and deeply moved by your story of love, caring and commitment. Your wife was fortunate to have you by her side during such an incredibly difficult time. You are a light and a blessing in the lives of so many and bring so much dignity to our profession. Thank you for sharing your story and all the best to you and your family always, Bridget

John- I have been browsing this “Caregiver” forum. I know it’s time for me to get help with perspective. As I was checking through my husbands carepages, making myself aware of which family members and/or friends had gotten a chance to see the latest update – the fourth of July holiday is over now so the rest who want updates wil start checking. And part of me felt sad. Each fourth of July – since my husband was born – his entire family has gathered to see our “small town” (used to be small!) parade and then back to his fathers house ( the same house he grew up in) to play soccer and eat and be with family. For the last three years it’s gotten more and more difficult for my husband to attend. And then finally this year we were not even told of the particulars – it was assumed he could not make it and I think a decision made based on logic. And somehow – though he knew there was no way he could be there – he was crushed by having not been told of the details or at least even hearing any mention of it by his dad. So – knowing his heart was hurt – and as I looked to see who checked on him before the gathering and after – trying to anticipate who might try to call – I had so many emotions; and I knew that I needed a group who knew. And that even though loved much by family and friends – lots of them do not “get it”. And being sad or angry with them is the worst way to use up what energy I have left.

I browsed through different highlighted entries and found the tears of relief flowing down my face. I’m so tired – and everyone here “gets” that.

And then I came to you. And your words and I wanted to reach out and “hug” you. While you were loosing your wife, I was coming to the realization that my husband was more unwell then I was willing to admit. I also cared for my mother who passed away. And I have some medical background also. As I read your words- I cried for you. I am sorry for your losses: your mom so long ago, and your best friend/wife/love. I read your words and related so so much to that “push” to the cure, the answer – not wanting to quit!! And then the truth is that your love is even more driven then that driven spirit, isn’t it? We think so positive and try to bring our loved one along, don’t we?! But it just takes that special look, that meaningful conversation when our loved one says, “I love you so much. I’m trying. But I’m so tired.” And then we find out that our drive and our determination cannot fix this awful and unfair thing. I’m so sorry John. And what a beautiful blessing you are to your wife; I bet you also feel she was your blessing. That mysterious place of Nirvana. Yours was in having to let go. Someone else has already been healed. My sweet husband and I fall under the category of yet to be determined.

Thank you for sharing such a beautiful and yet painful story. I will think of you often and pray that time helps to let your heart heal.